Get busy living or get busy dying: opinion

Why are so many aged care professionals pushing for older people to have a “good death”? But not
a good life? What is this fascination with dying well after 3 years of living poorly as a frail older
person, now well exposed by the Royal Commission?

And why doesn’t this fascination extend to older people themselves where only 10% have
completed Advanced Care Directives, despite endless advice that this is a sure way to a “good
death”.

Older people are telling us it’s not their death that they are worried about but the years of suffering
before it. Strangely, this suffering has never bothered the rest of us enough to do much about it, yet
we can’t abide the suffering in the process of dying.

So strongly do we feel about this, and in the face of doctors not providing us with a “fix”, making
people “comfortable”, extracting them from their homes for end-of-life care, and a sense that
people would be “better off dead” are now the norms for relieving end-of-life suffering (ours and
theirs).

But it gets worse it seems we don’t die reasonably quickly any-more. Instead, we’re counselled to
accept the “reality” that we are dying for the whole of those 3 years that the health services data
tells we will be frail with very high use of their medical services (and even longer if we’ve got
dementia).

So, just as retirement requires us to be old, frailty now requires us to be dying. But biologists have
never been clear whether “over-ripe” is dying. Older people just think they’re wearing out. And the
rest of us should be in no doubt that being categorised as dying is very risky.

In fact, the Royal Commission lifted the lid on practices in aged care that are death-hastening
whether we’re dying or not. The sustained abuse and neglect in aged care homes; the removal of
most of peoples’ life-sustaining habits and possessions on moving in; meals that hardly entice you to
eat; surrounding people with dying imagery that leave us in no doubt that all residents are dying;
grouping healthy people with dying people; and the dangerously long wait times for home care.

A clue to just how much providers are enmeshed in hastening residents’ death came recently in their
response first to the Royal Commission findings and then to Covid.

When the Royal Commission exposed that neglect and abuse weren’t isolated incidents but endemic
to the sector, providers responded, not with shock, apology and determination to protect their
residents, but by asking for more money and relegating the problem to “poor” providers. Two years
later they apologised, but we are still waiting for their urgent response to protect.

When Australian aged care homes were shown to have some of the highest Covid death rates per
head of population in the world, providers sought to respond with infection controls, already shown
to be dubious in ships and medi-hotels, and still haven’t moved to design much safer facilities.

Perhaps the saddest aspect of death-hastening practices in aged care are the suicide rates, probably
the highest of any group and increasing. Difficult to measure due to the hidden ways people suicide.
The empire wants us to think that this might be a reasonable response from people who’ve had
enough of suffering.

But the suffering that comes with being frail can be either unavoidable or imposed with the two
becoming so intertwined that people can no longer see the difference, or imagine one without the
other. No-one any longer notices the way providers rush to relieve end of life suffering with one
hand, while causing much of it with the other.

“I’d rather die than live in a nursing home”, the universal catchcry of older people, tells us just how
much they resent the imposed suffering (can you think of anything imposed on the rest of us where we would rather die?). But it also tells us how much older people have been socialised into dying, so
much so that they see dying as a solution to a housing and care problem.

Hardly surprising, older people have now become suspicious of anything that asks them to sign up to
end of life practices, given they know what goes on in hospitals and aged care homes better than
most. And they may well be right with Cardona’s research now indicating that Advanced Care
Directives don’t increase death-literacy or result in a better death. Let alone that they might make it
that much easier to hasten death.

With the risks of death-hastening so great, we identified 4 possible safeguards, none of which
currently exist!

We could raise consciousness of death-hastening and call it out. We could pro-actively include
families in aged care, and build an understanding of the range of practices that exclude them. We
could build communities where older people live better, because Buettner’s research shows where
they live better, they live longer. And we could ensure that the new rights legislation arising from
the Royal Commission recommendations includes the right to live out your life.

The empire will argue that all this is denial that some older people are dying and of their right to a
“good death”. Confusion is rampant here, but building a case for a “good death” without safeguards
against death-hastening comes with serious risks both for older people and good practice.

Who’s running this show? Are the providers doing the communities death-hastening bidding or is
the community colluding with the providers’ bidding? What we do know is that we are increasingly
feeling caught between the love we feel for a frail older relative or friend…and wanting medical
science and care to deal with the issue so that we can get on with our lives. And providers do that
for us, often with great “kindness”.

So, let’s name all death-hastening practices for what they are, and build the 4 safeguards. Let’s also
build our culture to include a “good death”. But more than anything let’s put a lot of energy into
becoming one of those places in the world where people live longer better…before they die.

Mike Rungie specialises in the intersection between good lives and aged care. He is a member of a number of boards and committees including ACFA, Every Age Counts, Global Centre for Modern Ageing and GAP Productive Ageing Committee.

Do you have an idea for a story?
Email [email protected]